Saturday, June 19, 2010

Stress headache. Pretty near constant. And every time I get one, I think, "Okay... the doctor didn't say 'brain'..."

I mean, really. I don't want to be a textbook, "Oh, she's right at 'denial' on the grief scale." But my bones don't hurt. If I didn't know I had lung involvement, I wouldn't think about my breathing any more than a mild asthmatic with California allergies ever does. I can get up and move and do what I want to do.

I had time the other day with one of my priests and the Canon to the Ordinary. Kathleen and I had been talking for an hour, in the solarium at church. She needed to go to a meeting with Britt; I said I'd forgotten to eat lunch. (It was 3:30.) So she invited me along to Bernardo's. The three of us, and Kathleen's new dog, sat outside. It was a gorgeous day. I knew I was with enviable company, and I wanted to be with them. Britt knew how to be with me--curious, compassionate, asking questions about both the illness and the ministries I do. (I know she's an ally now, and I know she will be after this is over.) It was so normal--and it so wasn't.

I had only just begun to let myself feel my grief and frustration. I had just cried for the first time, talking with Kathleen. She completely gets it, supports me and is my ally--but the ally that I don't have is time. We'd been talking about the surreality of all of this, and I finally said, "If I wanted to bungee-jump off the Golden Gate, I would do it. I want to do what you can do. And the process takes time."

All I want to do is take the sacraments to the river and feed people. I've been encouraged to go outside the institution to do it. I know that I could, in a word, "just grab bread and go." I have the approval of the people I care about: the clergy who see me and know me, others who work with me and watch me on hosting nights, Safe Ground. I don't know why the church's blessing matters so much to me. I don't know why I want to serve this institution. But it does, and I do.

We're going to work with my treatment schedule, and get that process going. It takes years. I'm living with the absence of all guarantees. But for some reason, I have this desire and I can't shake it. I'm called to do this, in this way.

That may change. If I know I'm physically running out of time, or if the powers-that-be at the cathedral or the bishop tell me I'm too sick and need to wait until I'm well, I know I have an alternative. But for now, this process is what I'm called into.

That certainty palliates the grief a little. I need the bishop's permission, and I don't know how he'll feel about allowing me into rigorous community discernment while I'm exhausted, achy, and nauseous. But I couldn't be any clearer than I am. I already have one "yes" that matters. And I can be as articulate as any human ought to be, about why I need to do this. Why the homeless community needs me to do this.

A and I have a game. I'll ask over and over and over, ever more insistently, for an imaginary object. She'll come up with an imaginary location for it, out of reach. We were into it last night, laughing and being ridiculous, when I had to stop. I was putting my grief into this game. I want life, and time. She can't give them to me. My health care team will do their damnedest. We don't know how my body will respond to treatment.

I feel as well as you do. And I have a killer in my lungs and bones.

I mean, really. Hey God. You made the universe. What the fuck? Why give me this desire, if I don't have time to do it? Why is that the thing that focuses, when I need to put my energy into my health? You are everywhere in this, except in the cause of the illness because I can't imagine you giving it to me. So what do I do now? And don't you think you ought to tweak that evolution thing just a little bit? Cells are supposed to grow where they belong. Not everywhere.

I know that if I am to live through this, I need to come through it whole. Body, mind, spirit, soul. Purpose and process and being. Total integrity.

And I don't know how to stop being angry at my body. I know rationally, it didn't choose this. The cancer cells went bananas and invaded where they weren't supposed to. A body, given the idea of sentience, wants to be healthy and strong, and support the being who inhabits it. My body is as much a "victim" as I am.

I know I need to learn to love my body and support it. I can get as far as, "I'm sorry, bones, that I'm mad at you." And I stop there. I keep thinking, "Why the fuck did you let this in?"

I tortured myself for a year. And here I am, a breath short of a year later, with stage IV disease. I knew a recurrence was statistically possible. But I had not imagined it would ever be this rampant.

I look too well for this. I feel too well for this. And here I am.

My spiritual director suggested that I write a dialogue between my body and myself. Give my body a chance to speak, let it have a voice, tell me what it knows. I haven't tried that yet. Maybe I ought to, soon.

Frustration. Denial, at the same time as I hunger for information. Grief. A need to believe in the treatment, even as I don't trust my body as far as I could throw it. Here is where I am.

We're going to Santa Cruz tomorrow, until Monday. A's good friend is a priest in Aptos. He knows, and we'll visit there. I can't wait for space and wind and sand between my toes.

7 comments:

I'm so sorry. All I can say is you are in my prayers. I was diagnosed with ovarian cancer about the same time you were. I hope that you will be well and can follow your dream. Or will follow your dream even if you are not well.

My spiritual director suggested that I write a dialogue between my body and myself. Give my body a chance to speak, let it have a voice, tell me what it knows. I haven't tried that yet. Maybe I ought to, soon.

Amen to that advice, Kirstin. My body talks to me, which is, or so I believe, a good thing.